Voices Across America

Didn’t look sick enough to warrant care

Barbara

State: Connecticut
Congressional District: CT01

Diseases

Chronic Pain, Gastrointestinal Disease, Mental Health, Neurological Disease, Rare Disease

Issues and Challenges

Barbara has encountered: Access to Expert Providers, Copay Issues, Medicare / Medicaid Issues, Mental Health Access, Rare / Underserved Disease, Surprise Billing, Disability, Discrimination (nonmedical), Financial Assistance, Food Insecurity, Gaslighting, Invisible Illness, Medical Devices, Medical Discrimination, Prior Authorization

My Story

TW: mention of suicide

My story begins ten years ago. I was seventeen years old at the time. I had enlisted into the Air Force, but my onset symptoms of persistent nausea, vomiting, and abdominal pain prohibited me from leaving for basic training. My quality of life changed drastically. I went from being a healthy, athletic individual and a go getter to waking up every morning with severe nausea, bloating, and vomiting. Sometimes the symptoms would last for just a few minutes, but gradually became worse to the point where I was severely sick for days to weeks like I had a constant flu.

As my symptoms became worse, my ER visits became more frequent. I was severely malnourished and dehydrated from vomiting so much, therefore, I needed to go to the hospital often for IV fluids. I was told over and over again that all my bloodwork came back normal and that I was ok. I was repeatedly told to see a psychiatrist and do more aggressive therapy for my mental health. I went through several primary care providers and specialists. I was gaslit and my symptoms were attributed to stress and my mental health for so long that my health declined severely. I was suffering and no one was helping.

After a few years, I received a diagnosis of Celiac Disease. I thought I finally had my answer. The doctors told me to simply stick to a strict gluten free diet. However, even after continuously being on a gluten free diet, my health was still declining. I was still suffering from the same gastrointestinal issues, only they were getting worse, and I was experiencing more symptoms. I went through many more doctors and specialists. After many more years of frequent ER visits, testing, and misdiagnoses, I would be diagnosed with Gastroparesis, Epilepsy, Ehlers-Danlos Syndrome, and Postural Orthostatic Tachycardia Syndrome.

Thereafter began trialing of medications that failed or made me sicker, finding a doctor that specializes in my new rare conditions, and many more hospital admissions. Nothing seemed to work, and no one seemed to be able to help, or care enough to. I was discriminated against often. I didn't "look sick," so I was judged on by my appearance. I had makeup on, and I was well put together usually, so I couldn't possibly be sick. Some days I could function with minimal symptoms, so I couldn't possibly be sick. My bloodwork always came back "normal" so I couldn't possibly be sick. I was in a hospital bed more than my own bed now. My frequent hospital visits led doctors to believe that I was a drug seeker. I would oftentimes hear nurses and doctors in the ER talk about me as if I wasn't even a person, but rather an inconvenience that they had to "deal with." I would overhear conversations about me that I was a "frequent flyer" and that I was just simply looking for drugs. Doctors refused to give me pain medicine as I laid in hospital beds screaming in agony when I was going through horrible flare ups and ignored me when I stated that something was wrong. One time, my feeding tube dislodged and came up my throat. I was still denied pain medication and was told that it wasn't that bad.

I could write a book alone about the mistreatment I have received as a chronically ill patient, but I will tell you about my most traumatic medical experience. I had been persistently vomiting with severe abdominal pain that had me screaming in pain. I took an ambulance to the hospital and was instantly confronted with judgement. "Barbara, you need to stop crying. There are other patients around you that are sicker and don't want to hear you." When the doctor came in, I was told that I would be given Ketamine and Dilaudid for my symptoms. I could hear my nurse talking with the other nurses saying, "This will shut her up." As soon as the doses were injected into my IV, I blacked out, but not fully. I was somewhat aware, barely conscious. I could faintly hear what was going on around me, but I couldn't move my body at all, no matter how hard I tried. When the medicine started to wear off, I woke up face down with my head in a vomit bucket with drool in it. I was freezing and could barely hold myself up. I wrote a complaint against this hospital, and no one ever followed up on it.

The mistreatment and discrimination against chronically ill patients need to end, doctors need to be more educated on rare diseases, and furthermore, insurance companies need to do better in covering and supporting chronically ill patients. Suicide rates are elevated in those who are chronically ill, and I strongly believe that these issues are key factors in this epidemic. It shouldn't be so stressful to receive the help that we need whether it be medically, financially, physically or emotionally.

My Motivation and Inspiration

My motivation is to be an advocate for chronically ill people like me and raise awareness to create change in the healthcare system. I'm sharing my story in hopes that this will reach who it needs to, to raise awareness, and to hopefully help someone.

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